Myeloma UK Calls for More Data Transparency to Safeguard Patients From COVID-19

Myeloma UK is calling for more data transparency in government efforts to safeguard myeloma patients during the COVID-19 pandemic.

This comes after results were released from its COVID-19 survey that sought to examine the rate of COVID-19 infection among myeloma patients, changes to planned treatment due to the viral outbreak, and how the unfolding pandemic is affecting the myeloma community.

The survey, conducted from Aug. 28 to Sept. 16, found that 71% of myeloma patients are concerned about paused efforts in the United Kingdom to protect them from COVID-19 infection, and 46% are uneasy about those efforts having to resume due to a rise in COVID-19 cases. The survey garnered 815 responses — 621 from patients and 194 from patients’ family and friends.

The questionnaire was the second of three Myeloma UK surveys to investigate the impact of COVID-19 on myeloma patients and their families, in order to press for services needed. The first survey, which took place in May, found that 86% of patients and 93% of family members and friends were concerned about long-term effects of “shielding” — government recommendations such as social distancing to help reduce the risk of COVID-19 to vulnerable residents.

“Our surveys represent the single most comprehensive picture of how the myeloma community has been impacted by COVID-19,” Shelagh McKinlay, head of patient advocacy at Myeloma UK, said in a press release.

“We cannot ignore the high level of disruption, uncertainty, and anxiety the myeloma community is facing due to [a] lack of transparent data around government decision making during the pandemic,” she added. “But we are pleased to see that although shielding has been lifted, the level of COVID-19 infection in myeloma patients remains low.”

The second survey was launched after U.K. shielding measures had been paused. While the survey was being conducted, schools reopened in England, and the country made unlawful any social gatherings of more than six people in indoor or outdoor settings to combat rising cases of COVID-19 in the U.K.

Sixty-eight percent of participants in the second survey also completed the first one. In addition to revealing complex experiences surrounding shielding, responses to the second survey turned up four COVID-19 cases. In the first survey, three patients reported infection.

The most recent survey also found that the availability of alternative oral treatments and other measures means that patients have continued to be treated throughout the pandemic. Consistent with results from the first survey, about 42% of patients who are receiving some therapy said their treatment plan had changed.

In addition, while patients’ mental health has overall remained stable, family members and friends are experiencing a more significant burden, the survey found.

The number of patients diagnosed with myeloma during the pandemic is on par with the usual pattern but the survey sheds no light on the number of patients who continue to seek a diagnosis, the organization said.

The survey also showed a high level of concern — 63% of those affected — about the impact of stem cell transplant (SCT) delays due to the pandemic, and uncertainty about when the procedure might take place. Forty-three percent of patients surveyed had their SCT postponed and rescheduled.

As localized restrictions are introduced in the U.K., there is a risk of inequalities in treatment and care, said Myeloma UK, which called on the government and the country’s National Health Service to release more localized data on health service performance so that any treatment gaps can be swiftly identified.

“It is evident from the survey findings that more needs to be done to reduce the disruption and uncertainty myeloma patients, their friends, and family are facing due to the pandemic,” said Laura Kerby, Myeloma UK’s chief executive. “With COVID-19 levels rising across the U.K., we urgently need clear and transparent criteria for initiating and pausing shielding.”

Kerby also pushed for more myeloma-specific information about the pandemic’s impact on myeloma diagnoses. The organization would use the data to determine the scale of the problem, and to advocate for resources needed to remedy what could be a patient backlog.